grief

Sometimes my son’s disability and mine meet in a strange and gravely beautiful way. I hear him vocalize and I think my sweet boy is gaining his voice while I am losing mine. There is something poetic about it. I know rationally that the two events have nothing to do with one another. But I would gladly give him my voice, go silent forever so that he could speak. Sometimes it feels like that’s what’s happening. A precious exchange. Perhaps that is just a notion my psyche has conjured to protect itself from the horrors that await me with this disease. If I can fantasize some purpose to my loss, some meaning to it, it won’t frighten me so terribly.

I cannot pick my boy up anymore. It’s been months now that I cannot lift him. R does not use any functional speech but communicates in a secret body language with us. He grabs our arms and places them around his hips, pulls and lifts on his toes in a silent but clear request to be picked up. When he asks me to hold him I call my husband, and my husband lifts his weight while I hold him in my arms in a pantomime of how I would hold him before I got sick. I have often wondered if he realizes I can’t lift him, or if he thinks we are just behaving strangely.

A few days ago I sat on the grass watching him play with his dad. He suddenly ran to me, pulled me to my feet, and positioned me as if to say “don’t move.” He then ran to his dad, hand led him to me, and then requested I lift him while placing his dad’s hand on himself from behind. It was clear he did indeed understand that we needed dad’s help for me to hold him. He effortlessly puppeteered us into position for me to pick him up with my husband lifting his weight. We did, and he lay his head on my shoulder and melted into me. The intensity of my emotions hit me like a ton of bricks. I had forgotten how it felt to truly feel the weight of his form against me, his body soft and warm, the smell of his hair and skin. We’ve done this before but never so absolutely. This time he gave himself completely to our strange hug and it felt like before, like when I could truly stand and hold him in my arms. He lifted his head from my shoulder and stared deeply into my eyes while clutching my shirt in his little fist. This kind of eye contact is so rare and when I get it from him it feels like the most precious priceless gift. Like the clouds have parted and we are bathed in warm angelic light for a few unearthly moments.

Sometimes I worry that R might lose interest in me as my disease progresses. That if I can’t speak to him at all, if I can’t use my hands and arms to soothe and tickle and hug and hold him, that he will find he no longer needs me. But moments like R’s request to be held soothe my fears. I will always be his mother, and our bond can survive this, it can.

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Okay. I’m going to vent here a little. And I’m sorry/not sorry if I am, in this post, seated on my proverbial high horse. A Facebook discussion really got this topic back on my mind. It drives me nuts when people share videos/blogs about how hard it is to be the parent of an Autistic child.

So much ‘autism parent grief’ is preventable if said parents could just let go of what they thought parenting would be like, and create something new that fits their child and their family. This phenomenon is not restricted to parents of Autistic kids. I’m sure every parent recalls those moments with their NT child where they envisioned this wonderful parent-child experience, but instead the child hated it and it was a disaster. I think the meme below, created by and for parents of NTs, illustrates it beautifully.

The difference is, it happens a lot more often and more dramatically to parents of Autistic kids. And while I understand parents’ disappointment of lost expectations, there is a point at which you’ve gotta put on your big girl panties, accept your child, and stop setting yourself up for more disappointment. …and setting your child up for more misery (!!!).

I can’t count how many times I’ve read an autism parent blog lamenting the tragedy of another birthday during which their child covered his/her ears and screamed at the Happy Birthday song, then proceeded to have a meltdown at the sensory overload and social overwhelm of the whole event. In these parents’ narrative it is not the child who is the victim of the story, it’s mom and dad. Poor mom and dad, who can’t even experience a proper birthday with their child. These parents will go on to repeat the whole fiasco next year. And they will grieve it. Again. And their child will suffer. Again. Folks, this is completely preventable. It’s not your day, it’s your child’s day! Stop singing Happy Birthday if your child hates it. Stop inviting all these people over. Figure out what works for your child to make it a special day and do that.

My son does not recognize gifts. But he LOVES Target, so for one of his birthdays, we pasted Target logos all over his gifts to make them attractive to him. This is one tiny way we were able to adjust to make his day special.

I see it with other stuff too. Trips to places the child is “supposed to” enjoy but doesn’t. Child doesn’t want to sit on Santa’s lap. He or she is screaming, self-injuring, melting down. Mom is moaning to the internet about how hard it is, how terribly sad, how all the nice little neurotypicals waited happily in line, smiled big for Santa. But your child didn’t. Guess what mom? Stop taking your child places he/she cannot tolerate and this won’t happen. It’s that simple. There was a family in an autism documentary I watched where the little boy’s favorite thing was to ride the city buses. Every day after work his Dad took him to ride his favorite bus lines for a few hours. That is what he loved, and so that is what they did together to connect and bond. In the end, shouldn’t it be about our kids? Stop making it all about you. Yes, it’s hard sometimes. You know what, parenting is hard. Take care of yourself, seek out supports, but when it’s you and your child, structure your family in a way that accounts for your child’s individual needs, challenges, interests, and joys.

When I talk to parents of a newly diagnosed child, one of the first things I always try to impress upon them is this: adjust your expectations. When you do, it has the power to change your entire outlook from a grief-centered perspective to a contented “this is our awesome family” perspective. I suppose that is the basic message of the famous “Welcome to Holland” poem which is oft shared with parents of newly diagnosed kiddos. And it really makes all the difference. Don’t set yourself up for more grief, more disappointment. Don’t make your child suffer for your own rigidity (hah- do you see the irony?). Find a way to be flexible, to grow your parenting into something that fits with your kiddo. Welcome to Holland. It’s not Italy, but it can absolutely be great, if you would only give it a chance.